Lighting the Way to a Cure

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Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Each Fall, families across North America join in the Walk & Roll to Cure FSHD. Living with Facioscapulohumeral Muscular Dystrophy can feel isolating, but through the Walk & Roll we come together and move closer to a cure.

Every move forward, every dollar raised, increases awareness, improves understanding, promotes early diagnosis and better treatment. Our collective efforts move research forward to effective treatments and, ultimately, a cure.

Learn More & Find the Walk & Roll Nearest You!

Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Each Fall, families across North America join in the Walk & Roll to Cure FSHD. Living with Facioscapulohumeral Muscular Dystrophy can feel isolating, but through the Walk & Roll we come together and move closer to a cure.

Every move forward, every dollar raised, increases awareness, improves understanding, promotes early diagnosis and better treatment. Our collective efforts move research forward to effective treatments and, ultimately, a cure.

Learn More & Find the Walk & Roll Nearest You!
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Advance Research

Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.

HELP ADVANCE RESEARCH
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Educate Yourself

FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD.  The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.

LEARN MORE
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Build Community

There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.

GET INVOLVED
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Invest in Hope

We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.

SEE HOW YOU CAN HELP
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Who We Are

The  FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.

Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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FSHD University

Education: A Patient's Best Weapon for Change

FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.

FSHD University is a place for you to gain knowledge, get connected, and find hope.

Learn More & Enroll in FSHD-U

Latest Blog Posts

An ounce of prevention…

September 26, 2023 by jkinoshita

September is Fall Prevention Awareness Month and was the subject of our Wellness Hour. Falls are the second most common cause of  injury leading to death. For a person with FSHD, falling and breaking a bone may be the incident that leads to becoming reliant on a wheelchair. That’s because it’s much harder for FSHD…

Read More...

The FSHD Society Celebrates Fulcrum’s Milestone in the Fight Against FSHD

September 8, 2023 by Erin Saxon

Fulcrum Therapeutics has announced successful completion of patient enrollment in REACH Phase 3 trial The FSHD Society is thrilled to announce a significant milestone in the battle against FSHD. Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a pioneering biopharmaceutical company focused on…

Read More...
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Upcoming Events

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Today

October 2023

Wed 4
Featured Featured Oct 4 @ 5:00 pm - 6:00 pm Event Series Women on Wellness

Women on Wellness – Adaptive cooking

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Adaptive cooking and adaptive eating will be our topic this month. We'd like to share different ways of cooking and/or providing the necessary nutrients we need daily. Come and join us! This is our mutual...

Sat 7
2023 Walk and Roll Calendar Feature
Featured Featured Oct 7 @ 11:00 am - 3:00 pm

New England Walk & Roll

Optum Building Rooftop 1325 Boylston Street, Boston, MA, United States

New England Walk & Roll Saturday, October 7, 2023 11:00am Check In Optum Roofdeck, 1325 Boylston St., Boston MA 02215 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art...

Mon 9
Wellness Hour
Featured Featured Oct 9 @ 5:00 pm - 6:00 pm

Wellness Hour on Emergency Preparedness

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of how it's important to be prepared for emergencies. Having a disability requires extra planning. Our guest this month is Laura Jull, MEd, who began her...

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General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

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